This is the story of my battle with Meniere’s Disease. I have never written it down before and even when my father suggested I do so a few months back, I hesitated. I didn’t feel like writing at the time. These days, when I type, I have but a few well-spelled words before all keys break loose and my sentences resemble French defense maneuvers (disorganized). A re-aggravated back condition produces shaking in my hands and my ongoing dizziness often robs me of coordination. So spelling and grammar suffer a lot. Since I look at my keyboard to type, things get a wee bit wacky. Thankfully, today’s a good day. So before I exhaust my energy today, here’s the scoop.
May 20, 2001
My bedside alarm clock hollered its usual 7:30 warning on a Monday morning, bringing my weekend to an abrupt and most unwelcome conclusion. It was time to go to work at a newspaper job I enjoyed but at a starting time I rued. I hate mornings like cats hate dogs and mornings usually return the sentiment. We usually manage a very tense peace, mornings and me. As I rolled over to hit the alarm clock I noticed something odd in the room. My eyes stared at the ceiling and I heard a distinct hissing sound in my left ear. Hiss, hiss, hiss… constantly it continued, like the static between stations on a old radio dial. The room was quiet, so I quickly determined that the hissing was coming from inside my head. I shook my head and pounded my left hand into my left ear, as if I was going to knock out some foul demon by the power of muscular force. “What the blazes is going on?” I wondered.
I sat up and something else came upon me — a feeling I had not felt before. My head was very heavy — and this was not the familiar “not enough sleep” kind of heaviness. It was as if someone was forcing my head down — from the inside! Hiss, pressure… “No, seriously, what the blazes is going on?” I stood up to walk to the bathroom in my apartment, a lengthy journey of six feet, but I found myself stumbling a bit as I walked. “Must just be some leftover sleep,” I thought. Most humans don’t hop out of bed with perfect equilibrium, you know? As I reached the doorway, I grabbed the right doorpost with my right hand and with my left hand flipped on the bathroom light switch. “That’s funny,” I pondered, “I didn’t hear the switch come on. Where was the click?” I turned the light switch off and then on again. This time I heard a click. But barely. I rubbed my right ear and snapped my fingers a few times. Soft noise. I clapped firmly a few times. Soft claps. I had no cotton balls in my ears, no ear plugs, no… nothing! My hearing was gone. Well, it was still there but, as far as I was concerned.. it was gone!
I looked in the mirror and everything looked the same… eyes, check, ears, no redness, face, not swollen… but I felt like I had been hit with a baseball bat and suffered a concussion. Hiss, pressure, hearing, balance… Something happened overnight and I had no idea what it was or why. I got ready for work as normal, but as the morning progressed I started to notice more and more things were out of kilter. When I tuned on the shower, the loud hiss of the water was incredibly annoying. When I put down the toilet seat, the tap of plastic seat on porcelain sounded like the crack of Indiana Jones’ whip. My dishes in the kitchen clanked with so much volume that I cringed at every tap. Hiss, pressure, hearing, balance, sensitivity to noise…
I got in my car and on my way down Dixon Lane in Gainesville, Texas, I encountered issue after issue with noise. First of all, the hissing continued in my left ear and I noticed a high-pitched ring in my right ear. It was soft, but it was most definitely there. I turned on the radio and every bass tone, buzzer, and high sound felt as if someone was torturing me. It echoed through my inner ears and caused sharp pain. At a stoplight I grabbed an old fast food napkin and stuffed plugs into my ears. “What happened to me?” Needless to say when I described my symptoms to my co-workers at the newspaper they recommended I go see a doctor. I didn’t have a personal doctor. After all, I’m a man. Why do I need one?
About six months earlier I had a stomach procedure at the local hospital and the ER doctor who first treated me gave me his business card. So I called up the family medicine practice of Dr. D. His associate, Dr. G., had an opening that next day, so I gutted out the rest of that day and on Tuesday morning I checked in to see him. Dr. G was a kind man, and I expected nothing less of a small city doctor. He took down my vitals and listened to my symptoms. All during my examination I noticed that he seemed to be nodding a lot as I spoke (I usually talk more than doctors. Or nurses. Or assistants.). When I finished speaking, he said, “Mr. Newton, I think I know exactly what’s going on with you. I just need to check on something and then I’ll be back.”
Dr. G. left the exam room for about five minutes. Did he have something in the microwave? Did he leave the oven on? But he returned to the room and seemed more sure of his convictions than before. “Mr. Newton, based on the symptoms you described I believe you have a disorder called Meniere’s Disease. “Huh?” I retorted. “It’s named after a French doctor and it’s not all that common. But my brother-in-law just happens to have Meniere’s and every symptom you described fits his description of the disease.” Dr. G., it turns out, was the brother-in-law of Dr. D., my ER doctor. Dr. G. went on to explain some things about the disease. He said it:
- is of an unknown cause. Back in 2001 there were as many theories about how Meniere’s develops as there are ways for the Chicago Cubs to disappoint their fans. Some said it was a virus, some said it was too much body water, some said it was aliens. Just kidding. No aliens. I think…
- it has no known cure. As far as science knows, Meniere’s stays with its victims for life. There was no pill, no guaranteed treatment. What works for one person fails another.
- it comes and goes without warning. Meniere’s, he said, comes in attacks (or “episodes”) that last from a few minutes to a few days to a few weeks. Rarely does it last longer than that, he said. But when an attack stops the disease goes dormant, but not extinct.
- it seems to affect a specialized fluid in the inner ear. This fluid is not water or blood or anything similar. It is made by the body for the coccular area of the ear and is found nowhere else in the body. If the fluid is drained, the hearing goes for good. If the fluid is agitated by something, the hearing is altered. Meniere’s agitates the fluid. Somehow.
- it’s probably not a good idea to drive or listen to loud music. I told him that, seeing how I drove myself to the clinic, I’d have to disregard the first part for at least 10-15 minutes. And then on my way home from work. And back to work the next morning… I was a sports department of one in those days and we had a daily newspaper. Thankfully, though, I lived about one mile from the office.
I honestly cannot remember what medicines he gave me to offset the symptoms I was experiencing. Most likely, one of them was an antibiotic. Doctors prescribe antibiotics as frequently as truck drivers drink coffee.
Over the next two days my episode of Meniere’s continued. Hissing and ringing in my ears, occasional dizziness (but not bad), pressure on my head, mid-level hearing loss and sensitivity to noise. I wore earplugs all day and just went about my daily business. On the morning of the fifth day I woke up to silence. No, not the horrible permanent silence… the good silence. No more hissing, no more noise. My hearing returned to normal. Whew! Wow.
I went through the rest of that year with no more sign of my Meniere’s Disease. It was sleeping and my life moved on.
During the summer of 2001 I moved down to Grapevine, Texas, to work for a bigger newspaper, that fall I started studying at Dallas Theological Seminary, I picked up playing the guitar, and in early 2002 I started co-leading worship at Gainesville Bible Church. Music started growing on me and I was SO thankful that Meniere’s wasn’t around to impact my ability to play and hear my guitar.
Meniere’s woke up like a long-forgotten volcano. It happened just like the first time: one morning I heard my alarm clock, opened my eyes and, bammo, it was there. Hissing, ringing, pressure on my head, hearing loss, spewing lava… the whole nine yards. It lasted only three days this time but I noticed that my balance started getting worse. As I walked down a hallway, I’d start straying from my narrow road and heading for the wall. It was subtle but noticeable. Moving to Grapevine meant that I had an hour-long trip to church in Gainesville and I wondered how I would be able to drive such a distance with balance and hearing issues. Thankfully, the attack happened during the weekdays so I didn’t have to find out. Not yet.
I once again had a Meniere’s attack but this time it was short-lived. Two days. Whew! I was affected some at work but I now knew how to handle the attacks. I sat still often, stayed near walls, used ear plugs, and let the attack pass. One morning, I woke up and it was gone. The volcano was still. But trembling. During that year I started having issues with sleep and balance. When I got little sleep (like, less than five hours) I would be extremely dizzy the next day. I would find myself subconsciously leaning against walls, chairs and tables. At the time I thought it was just sleep-related dizziness, since the two seemed to connect. I have later learned that it was a side effect of Meniere’s Disease. Like those geysers in Yellowstone are symptoms of the volcano below, my sleep and dizziness issue was directly related to the disease inside.
During the summer of 2004 I expected my annual Meniere’s attack to come since it always seemed to come in the summertime. But it delayed. I was excited, thinking I had finally shaken the mighty dragon. But one Sunday morning something very scary happened to me. It was the first week of August. I woke up at 6am to get ready for the hour drive to Gainesville, to open up the church building (I was worship pastor by then) and for worship practice. But I woke up and my Meniere’s volcano was blowing steam, ash, chunks of lava and that super-heated gas cloud thingy. It was a Sunday. I had responsibilities. And somehow I had to not only play, but sing, and do so in a manner that did not interfere with our congregation’s worship. All while not being able to hear properly.
Dwelling on this, I took off in my car and headed north to Gainesville. Everything seemed well on the drive until I passed Sanger on I-35 and went over a swale in the pavement. All hill broke loose and my head started spinning and I lost my view of the horizon. At 65 miles per hour! I crossed a lane and swerved onto the shoulder before I managed to slow the car down enough to bail off the highway. It was God’s mighty right hand that kept a semi-truck from being next to me at the time, otherwise… yikes. I coasted to the upcoming exit, left the interstate, pulled over on a gravel pull-out, and broke down emotionally. My world was a mess. I couldn’t tell up from down, I couldn’t hear the car radio very well, and I didn’t think I could continue the final 20 miles to Gainesville.
Five minutes passed, 10 minutes, then 15… all while parked on the side of an interstate exit. I lay back in my diver’s seat and said a few urgent prayers. Heavenly SOS messages. I’m sure you know the type! My head calmed down enough and I stubbornly decided to continue to Gainesville. It wasn’t as if I could drive 45 miles home! And back into the big city. I drove slowly on the service road for a while and then got to the church a few minutes late. I have no idea how worship sounded that morning. I had two napkins stuffed in my ears, making it near impossible to sing on key or know what exactly I was strumming. I drove home without incident, keeping a watchful eye for that hill north of Sanger.
The next week was pure torture for me. The Meniere’s attack lasted seven days. I was in summer school that week and listening to the professor with earplugs in my ears was brutal. I had to shake off a heavy head, newly intensified dizziness, and extreme fatigue for six hours a day, five days that week. All while driving downtown for school. By God’s grace, the episode ended the next Sunday morning.
Meniere’s came and went every year, usually during the summertime. It never lasted for longer than a few days and, like a bandit, always arrived and left overnight. I always had roaring (hissing) in my left ear and ringing in my right. I always had headaches and head pressure. And my dizziness was always bad during attacks and, post-attack, on mornings after I lost sleep. However, since I knew that the volcano would die down soon it made attacks easier to bear. On some days when I was working for Crossroads Bible Church I would head into our publishing workroom and have to sit down or rest for five or ten minutes to let things calm down. I noticed that with each attack I would become more and more fatigued, losing energy in my arms, legs and neck.
In 2010 I found out that my back was in pretty bad shape. Five MRIs and multiple doctors discovered five bulging discs in my back, two of which were pressuring my spinal cord. Through the course of treating my bulging discs with chiropractic rehabilitation, I discovered something else about my Meniere’s Disease. One day my doctor, Mark, decided he wanted to see if I had “crystal” mineral deposits in my inner ears that were causing some occasional dizziness. So he and another doctor put my head though a series of uncomfortable motions while I was lying down. What we all discovered was that my dizziness momentarily “activated” when my head was turned down (or back) and to the left.
There was no evidence of crystal deposits in my ears but they discovered one of the “quirks” of my Meniere’s. It gets worse when I turn my head back and to the left. Turning right wasn’t great, either, but left was super bad. And it took me a while to recover from the nauseating dizziness. The most interesting thing I discovered was that my Meniere’s was still active, even when the other symptoms weren’t present. Somehow my equilibrium had become affected over time and no “attack” was needed to trigger problems. At that time, moving my head back and to the left was an issue that I had no idea about! But I rarely did that in the course of my normal life.
(Now, I look back and see that motion discovery as a key piece of information in my search to understand my Meniere’s Disease. Right now I pull left as I walk. When I turn my head quickly left or spin left I have major balance troubles. As I found out in August 2014, my left inner ear is damaged. The right one may be, too, but to a lesser extent.)
October 20, 2012
This is the day that my life changed. If not for one small detail, it might have been one of my best days… ever! Or one of my worst.
Tune in later for Part Two……